Ya'll are wonderful. I am so glad I joined this
board.

I am very much for the Proton Treatment and I
knew he would get "regular radiation" as well
but NO CHEMO!!! I didn't really understand
the medical reason, but the nurse said proton
would take care of the need for chemo. I too
agree that if MD Anderson is investing in the
unit, it works. MD Anderson's will be completed
withing the next 18 months.

We would have to live in CA for two months and
yes, it would be an expense. I can't convince
my husband Bruce that this is a better option,
regardless of the expense. We would manage
some how (not really sure but Oh well)....

The drs here said since he is Hep C they would
have to modify the chemo as we went along.
If he blood gets too bad they would have to
stop radiation, etc until he recovers and then
start again. Oh great....prolonged treatment???

I think he is not wanting to fight back. Both
parents died while he was young (17) and feels
he is domed. His brother at (50) is in a
nursing home with a incurable heart condition
and wasn't suppose to be alive today.

I learned from just reading the posts here, that
I really don't know much about what is going to
happen. I have to get with it and learn more
to help him make the right decision on his
treatment. I trust the doctors that we are
seeing now, but I want to be sure this is the
right road to take.

Thanks for you help....

Patsy

Patsy,

It looks like there are only 3 places in the US to get this treatment. It seems like pretty good stuff. On the "no chemo" issue, and I'm only speculating here, they seem to be in the early stages of treating cancers other than prostate. Gary, any thoughts? The chemo might make it difficult to track the effectiveness of the treatment. I AM NOT SUGGESTING THAT THEY ARE RISKING HIS LIFE. Personally, I would be happy to go for post radiation chemo if I could have less injurious treatment. Bottom line is that you need to educate yourself, meet the doctors, review the treatment options and make the choice you are most comfortable with. And, unfortunately, the financial impact of being treated in another city enters into the decision.

Glenn

I see this has been well discussed under a different topic area, and by better minds. Never mind!

Dan had Chemo but only as adjuvent to Radiation.
My question is......
Why do some get teeth pulled and some do not? Dan had tonsil cancer, does it matter if it is tonsil, tongue, jaw etc.
Thanks

The chemo they would most likely be giving him would be Cisplatin which is an adjunct to the radiation.

Since no one here yet has come back with a report on PBT I have no thoughts on that either. What I have read however is that it shows great promise as the treatment of choice for many cancers, particularly where healthy tissue loss must be avoided such as in the head and neck or prostate. The IMRT they give, as an adjunct to the PBT, probably isn't the whole boatload in contrast to those of us where it was the only radiation treatment modality.

Most treatment centers have some provision for housing so don't let that be an obstacle.

As I said earlier I too have Hep C and they never had to modify my chemo - I was monitored very closely however. Interferon is pretty tough stuff - some say worse than Cisplatin.

They did reduce it by one treatment. I had 2 vs. 3 because the tumor responded so well to the treatment.

Your husband can be a survivor too and have an even better life than would have ever imagined but he can't wimp out. He has to put on the armor, take up the sword and get the right mental attitude. There is typically no genetic relationship with oral cancer so his fight is unique and not tied to others so he throw the past out -this is his own fight. There are many of us here who are survivors and were advanced staging.

Patsy....don't hit your return key as you are entering your text into the little white box. .It is designed to just let you keep typing, and then in the final product, as you can see in everyone else's posts, the text automatically resizes to fit the screen.

PatsyJo,

Welcome to the neighborhood. Sorry you had to find us but I am glad you are gathering as much information as you can in preparation of perhaps the battle of your (and your husband's) life. I am a little curious how you picked the place you are going. In case you don't know, UT Southwestern is in the final stages of their certification process to become a National Comprehensive Cancer Network member. They are also part of the University of Texas system like MD Anderson.

I am not sure why the team would recommend radiation without chemo but as Gary suggests, I would use every weapon in the arsenal to beat the beast the first time around. In my case, I had some molars pulled when I was young and I did not spend the money for bridework earlier and because of the angle of the other molars, they strongly suggested removing all of my remaining molars to prevent issues at areas that I could not effectively brush or floss. Without the radiation, I probably could have made it many more years but the fear is that once infection sets in (after radiation), it could be life-threatening. Ironically, the insurance company refused to pay for the extractions done while I was getting a mediport and PEG tube placed. After almost two years of battling with them, they have finally paid but then they refused any implants. Their words were to the effect the only reconstruction covered would be breast prostheses since the law required it. I couldn't find any use for that...or at least didn't see how it would help me eat better so I opted out.

What your husband is going through right now is pretty much the course that I took. It is a devastating diagnosis and the more you learn about the treatment, the more scared you become. Many have traveled the road ahead of him and any of us will help both of you in any way possible!

I had just completed my Hep C treatment when a lump popped up in my neck and after 7 months of doctor rounds, I found out it was cancer that had already spread to two lymph nodes. The first thoughts that came to my mind was related to the rough Hep C treatment and what a waste that had been. I had a little anxiety that the Hep C would return as it is a virus and the body was going through massive stress during radiation and chemo. However, 18 months post-treatment I have had almost monthly blood work and the virus appears to have been kept in check. My liver enzymes elevated a couple of times and one even slipped below normal which mystified the medical team.

If there is anything I can do or if you have any questions please let me know. I am wishing you nothing but the best as your plan evolves.

Ed

Hi to all...

Very interesting about UT in Dallas, our surgeon was there but left it up to us on using UT doctors or one closer. Since, the Hep C, he said using our current onocologist would be fine.

Loma Linda is in the process of setting everything up. Is is normal to have second thought on treatment options? I want to throw up every minute and question myself on the really knowing the facts.

How often can a person receive treatment. Do people go through it more than once? A lot of you have had surgery first then treatment. Our doctor said it would be too disfiguring and they want to shrink it first???? Does this sound correct?

My gut feeling is to try the PBT and the regular radiation. I know he was sooooo sick during the HEP C treatment, he had to quit. His blood count and his constant vomiting was just too much. I just don't think he will make it on the traditional treatment emotionally...knowing what he went through before.

Thanks for all for your support.

Patsy

Patsy,
Hello & I am sorry to hear of your trouble. I just wanted to chime in & say my friend had a very large tumor on his tonsil. The doctors told him the same thing that it would be too disfiguring to do surgery first. They would try to shrink it with radiation & chemo then maybe talk surgery. The rad tx & chemo completely eradicated the tumor no surgery was needed. The pet scan showed him cancer free in Nov. 04.Hopefully this will be the case with Bruce. God bless! Maureen

Thanks Maureen......good thing to hear. I pray that will be our case.

Patsy